T4 - 125 taking for a few weeks, increased from a brief drop from 100. Was on 150 which was too much.
ECG showed high heat rate yesterday
Feeling unwell very fatigued
Cold sweats at night
Pain esp shoulders
Hairloss
Scalp pain increasing
Period ended Fri still continued to feel unwell which at 1st I thought was all due to period.
Private bloods showed Hashi antobodies etc in previous posts
Increased Vit D Dr precribed high dose.
B12 spray taking for a week
Eaten more folate ferritin rich foods
Eating less gluten
More greens, vit C foods.
GP callibg me tomorrow.... do I request referal to Endicrine as T4 heart rate etc.... I will ask GP for dosing advice but she struggled at last appointment. Should I keep on 125 or change to every other day 100 or 125. (Its prob too early for blood test from last set 21st Dec)
Or could I change the make of T4 im on (North Star provided by Lloyds)
I know I probally will need T3/NDT after your advice and looking at last bloods etc but that wont be something I will get quickly in short term. I have lots of information ready for that battle.
Sorry lots of questions of late, thanks for all your kind advice so far it means allot
I wish I could just stop taking this poison....
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BitterSweetS
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Palpitations when I was on levothyroxine was not only a puzzle (happened at anytime no matter where I was) to me but to the cardiologist too who was puzzled and was thinking of putting something in heart to monitor it. Just before that I switched to T3 and didn't need any further appointments with the cardiologist and heart calmed.
I saw a cardio specialist in the summer due to inflamation around heart and he explained Thyriod conditions can put extra stress on heart. Im so worried its doing it again now...wish I could help myself as everyone seems so unsure.
Thanks for sharing what you experienced, thats very intresting.
Before levothyroxine became the only option for us hypothyroid patients, we were given a trial of NDT (natural dessicated thyroid hormone) made from pigs' thyroid glands. They were given since 1892 without blood tests and from then on we didn't die as it provided all of the hormones a healthy gland would produce.
These are still used today but the NHS withdrew them due to False Statements the Organisation made about it with the result that it was very easy to get doctors to toe the line and at present it is still levo alone - regardless if patient isn't improving and who are being given 'other prescriptions' to control the disabling symptoms.
Levothyroxine is T4 alone. It is an inactive hormone and has to convert to T3. T3 is the Active thyroid hormone and it is needed in our millions of T3 receptor cells and it 'sends out waves' that last between one to three days.
The authorities also found a way to ban T3 which was prescribed for some patients who couldn't improve on levo or had a T4/T3 combination then came along a perfect opportunity to ban T3 as the Pharma company increased the cost to astronomical sums.
"Thyroid conditions can put extra stress on heart".
It is true that our heart as well as our brain needs the most thyroid hormones but both will be stressed if they do not have sufficient T3 getting into them.
Has he checked your Free T3 and Free T4? - both should be at the optimum i.e. towards the top of the ranges?
If we take too much thyroid hormones, our heart will be affected and we'll have unpleasant symptoms. We will also be symptomatic if not on an optimum dose to feel well if we cannot convert T4 into T3.
Levo is an inactive hormone - it has to convert to T3 (liothyroinine) and it is T3 which is needed in the millions of T3 receptor cells. T3 has to saturate the millions of T3 receptor cells in our body in order for us to function as we used to do before hypo.
The kindest treatment for someone whose thyroid gland has been removed has to either be a T4/T3 combination or NDT (and through false statements the Organisations have withdrawn it even though it was safely used since 1892.
Shaws I had a very similar story happen to me too . After my TT I was on T4 Only . Every symptom starting from palpitations would start any time no matter where just as you . It went on like this for a long time . I had a Cardiologist work up . And Thankfully couldn't find anything wrong and couldn't figure out why I was having palpitations . I finally went to an Endo asked for T3 it was instant palpitation reliever for me . However I had surges from T3 . Switched to NDT for my T3 mix . It turned out to be a much smoother way of getting my T3 for me .
I'm happy you've found NDT suits you. Some of us need options to trial and the fact that those who remain unwell on levothyroxine their lives/and family lives can be ruined. They may even lose their livelihood as our brains don't seem to work the same with T4 only as it did before becoming hypothyroid.
Ive been told today by GP to carry on T4 as the Endicrine wants me to carry on for 8 weeks on a 100 and 125 dose every other day. Heart they've put me on Naproxen and Omeprozole for inflamation on heart due to heartrate. No access allowed to even see Endocrine or consider T3 or NDT (no surprise) not that im expecting a chance anyway after reading the reality.
Sad thing is NHS have put me in this situation, as you said im suffering in my Job immensely, I cant work my usual fulltime hours and im getting warnings of the amount of sick ive had, I took after RAI last year and now this year on T4. As you have said its life debilitating , and my time with my young children is compromised massively.
I used to love sport and be so social, I cant even take my children to their sporting clubs anymore theybmve had to stop as keeping my job and the little energy I have for normal life is impossible.
Im going to keep going... 8 weeks again on T4 then I will do next set of bloods and may have to try private if I can afford it.?
Did they give you a 24 hour heart monitor before deciding a heart problem? Did they refer you to a cardiologist before prescribing Omezaprole
Well, I can only give my own experiences. T4 was absolutely awful (I can say that now as T3 resolved all the disabling symptoms). It was awful, you could be out in the shops - at work - or walking along the street then the palpitations overpower you. I even had to call ambulance quite often as I was incapable of doing anything as pulse was too fast. I don't know how many times I visited A&E.
Why prescribe Naproxen and Omeprozole if they haven't checked your FT4 and FT3.
For my fast heart rate I was given a betablocker to take last thing at night but you've been given NSaids. How can these calm your heart and T3 (for me) was a complete relief of all my palps.
(I am also not medically qualified but just have my own experience)
Oh how Right you are shaws . But with the reformulated NDT and back orders it's making it difficult once again . Our options are getting less too . It's a Shame that thyroid patients are having to deal with this over and over again .
I too am with Graves Disease and am post RAI some 13 ( unlucky for some ) years !
All I know now from being on this excellent site is that after much research and no help from the Nhs I have resorted to self medicating with NDT and know this to be a good decision.
Go to books - Your thyroid and how to keep it healthy - Dr Barry Durant Peatfield -
I know, you haven't got one but you need to know everything in this book plus
Elaine Moore - Graves Disease A Practical Guide - this American lady has the disease and has been through RAI - there is also a comprehensive USA website -
Barbara S Lougheed - Tired Thyroid - another lady from the states - after RAI -
from hyper to hypo to healing - breaking the TSH rules -
there is much to read and understand, we are all works in progress, but feel I'm going
forward now, as opposed to being in an Nhs cul de sac.
Hi BBS - ( sorry I can't call you Bitter, hence the initials ) -
I understand the predicament you find yourself in, and totally get that you have gone along with the doctor's suggestion to stay on Levothyroxine for the next 8 weeks.
The Levothyroxine may not be working effectively if your ferritin is low in its range.
It would be prudent to ask your doctor to test all vitamins and minerals to ensure the results are all optimum. As detailed on this website.
Am assuming your doctor will have taken bloods including your T3 and T4 so that in 8 weeks time you'll have another set of T3 and T4 bloods undertaken so to compare to and evaluate the effectiveness of this new dose regime.
If your doctor is only taking a TSH reading it is little more than useless after RAI thyroid ablation. Your feedback loop has been broken, a conventional TSH reading without the relevant T3 and T4 reads is of no value.
You may appear to have a suppressed TSH but you have Graves Disease and you will have TSI antibodies controlling your TSH giving a false low, reading. T3 plus T4 are essential readings and ideally they should both a balanced, sitting in the top quadrants of their ranges, giving a ratio of 1/4 - T3 to T4 :
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